When I recently put a picture of myself on the internet (Facebook) I noticed – also in the comments thanks all- the impact of my recent hospitalization was all in all quite intense.
My mother was sent out of the room when it was necessary to act and when even my lovely girl “helpline” was no longer welcome it made the situation serious. Separately, a few weeks ago I had a conversation with Intensivist about recognizing the limits of your own body. I now know my lowest blood pressure.
Of course, words of honor for the heroic doctor who saved my life, or should I say doctors because there were quite a few on that 12 m² where I lived the past week. In the end it was an intervention through my groin, which stopped the bleeding permanently, afterwards I learned that the doctor who was looking so interested was there purely for resuscitation, blood and plasma facilities.
What doesn’t really work in my favor is my humor. I keep on ventilating my atrabilious view of life till the last moment with the underlying idea that as long as sound comes out it is not dead! The moment your body starts to get stressed and you suddenly hold water everywhere in your head, is not the time to get started about owl imitations. Ever since I started to resurrect I wonder if they gave me blood belonging to a cat, since it seem I have nine lives to go.
But that’s me. And no mather how awkward, I will stay an optimist to the last fiber, up to the last blood vessel in my intestines, whether it is leaking or not! I think it makes me a special patient.
I can put my finger on the things that go wrong and wonder how locals like “John Doe” would have survived this same situation, but I prefer to look at what went well. So I played “ARCH” * with a doctor for a reason. Not out of suspicion, but because I am a complicated patient with many problems, it is useful to see that a good system is on the way. On the way, because there are still some privacy bumps here and there.
The gastroenterology is a bit of a shitty department where it is generally quite busy. Many back-and-forth traffic to the scan and scope dungeons under hard honking guidance from flatulent patients. It does not sound like the ideal workplace, the more astonishing when I see how enthusiastic the nursing works.
A BIG hug for the great care!
I can focus on the future again, unfortunate my trip to Pisa, where I would participate in a SLE focus meeting, could not take place, the plane left earlier than I had been discharged from the hospital, but experience shows that the willingness to fight for rare diseases like lupus and APS always brings me beautiful things and beautiful encounters … And that it is oh so necessary!
*Arch is the Dutch solution for a better bridge between local and university hospital. More information about the project https://www.arch.nl/en/
**Sander was admitted in critical condition
***I disagree with this treatment, the medicine do not work, my pillow is too hard!
